Ibañez-Masero, O.; Carmona-Rega, I.M.; Ruiz-Fernández, M.D.; Ortiz-Amo, R.; Cabrera-Troya, J.; Ortega-Galán, Á.M. Communicating Health Information at the End of Life: The Caregivers’ Perspectives. Int. J. Environ. Res. Public Health2019, 16, 2469.
Ibañez-Masero, O.; Carmona-Rega, I.M.; Ruiz-Fernández, M.D.; Ortiz-Amo, R.; Cabrera-Troya, J.; Ortega-Galán, Á.M. Communicating Health Information at the End of Life: The Caregivers’ Perspectives. Int. J. Environ. Res. Public Health 2019, 16, 2469.
Ibañez-Masero, O.; Carmona-Rega, I.M.; Ruiz-Fernández, M.D.; Ortiz-Amo, R.; Cabrera-Troya, J.; Ortega-Galán, Á.M. Communicating Health Information at the End of Life: The Caregivers’ Perspectives. Int. J. Environ. Res. Public Health2019, 16, 2469.
Ibañez-Masero, O.; Carmona-Rega, I.M.; Ruiz-Fernández, M.D.; Ortiz-Amo, R.; Cabrera-Troya, J.; Ortega-Galán, Á.M. Communicating Health Information at the End of Life: The Caregivers’ Perspectives. Int. J. Environ. Res. Public Health 2019, 16, 2469.
Abstract
Health information and communication are key elements that allow patients and family members to make decisions about end-of-life process and guarantee a death with dignity. Objective: To understand carers’ experiences regarding health information and communication during the illness and death of family members. Methods: This qualitative study was conducted in Andalusia based on the paradigm of hermeneutic phenomenology. Participants were carers who had accompanied a family member at the end of life for over 2 months and less than 2 years. Five nominal groups and 5 discussion groups were established, and 41 in-depth interviews with 123 participants were conducted. Atlas.ti 7.0 software was used to analyse the discourses. Results: Four dimensions of the dying process emerged: differences in carers’ perceptions of information and communication, a conspiracy of silence, consequences of the absence or presence of information, and the need for a culture change. Conclusions: Poor management of health information and communication at the end of life suffering and discomfort patients and their families. The culture of denying and avoiding death is still present today. A change in education about death would better enable health professionals to care for patients at the end of life.
Keywords
information; end of life; humanisation; health care system; qualitative research
Subject
Public Health and Healthcare, Nursing
Copyright:
This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
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